** Before you read this blog, please listen to the song "Follow the Light" by the Bethel Sanctuary Choir. The lead is sung by my Uncle Tom. You will need to listen to this song to understand the blog post. You can listen to it here.
Everyone has bad days. Maybe you got a flat tire. Maybe you had a fight with your friend or maybe you just woke up on the wrong side of the bed. Whatever the cause, on these days we tend to feel angry, annoyed, upset, anxious, frustrated, morose or all of the above, but we (hopefully) have someone to talk with and vent our misgivings to. Sometimes our chosen counselor and caretaker talks with us and gives us what they believe to be their best advice. Sometimes all we need is sometime to simply listen, give us a hug, dry our tears and help lead us out of the darkness.
Yes, everyone has a bad day, even those with Alzheimer’s disease. Last week my mom was having a bad day and this bad day happened to coincide with the day she was getting her haircut. Unfortunately, because my mom’s disease has progressed and she is in the more severe stages of Alzheimer’s, it is hard to understand her. Growing up, I always experienced her as more of quiet person, an introvert, but now she babbles incessantly, barely stopping long enough to take a bite of food. Thankfully, I mostly hear “happy babble” from her. Her happy babble consists of sounds, repeated syllables and sometimes a smile or laugh thrown in the mix. On some days, I am lucky enough to get a few words or even a phrase, but on this particular day there was no happy babble. There were sounds and repeated syllables, but these were laced with terrified expressions, moans, cries, sadness, fear and frustration. And I could not understand anything she was trying to communicate with me.
Chinel (Mom’s hairdresser, friend and personal angel) and I were doing everything we could to help her. I was straddling her wheelchair at the legs, with my face right near her’ s, looking her in the eyes, trying to get her to focus on me. There have been times that I can refocus her, reintroducing myself and my presence and she will flip her switch from anguish into authentic joy. This didn’t work. I held her hand and rubbed her arm. I hugged her, gave her a kiss, told her I loved her. Still nothing. Chinel and I tried talking with her, telling stories. Mom would stop, listen and think about what we were saying, only to go right back to her pit of distress. I played soothing music. When nothing else works, the soothing melodies of Miles Davis or Chris Connor usually does the trick, but again, no luck. Just like with the conversations and stories Chinel and I tried, she soon gave way to the darkness.
Maybe she was tired. Maybe she was hungry. Maybe she was uncomfortable or in pain. Or maybe she was scared of something that was happening in her reality that we could not see or comprehend. Whatever it was had the power and no matter what I did, nothing seemed to ease her troubles.
And then I tried one more thing.
There are people in our lives that carry an energy with them that just makes you feel good. They have a zen way of being. They exude kindness and bring peace to your soul when you are around them. My Uncle Tom, my mom’s youngest brother, is one of those people. On top of that, he is an amazing singer and I just happened to have a song on my phone where he is the lead singer.
I may not be able to understand most of what my mom is saying these days, but if you ask her a yes/no question she can usually answer it. I got her attention and asked her if she wanted me to play Tom’s song. She immediately stopped her anxious babble and said yes. So there it was. We were about to play a Christmas song and create a major musical faux pas because were still about two weeks away from Thanksgiving, but play it we did and we played it over and over. His voice, her recognition and her remembrance of her little brother and the song all brought some much needed peace to my mom.
The lyrics of Tom’s song really hit home with me that day. They took on new meaning for me. I was seeing them through my caretaker lens. These lyrics helped explain how I approach my every day experiences with my mom. On that day, and like many others, I was looking for a way to help my mom. I never know how she will react to me or to what I do for her. I was “Seeking direction, seeking what’s right, listening for angels, songs in the night” any sign of what might bring her joy or ease her pain. “Where will this lead me?” I never know. Every day, every minute, you never know what you will get with this disease. I am just doing my best to care for her and love her in the only way I know how. All I can do is “follow the light.” I will continue to follow the light of love, radiating it by offering her unconditional love, patience and acceptance. “And whatever lies ahead” we will tackle together, so my mom will know that she is “never alone.”
As you go through each day, whether it is the best day of your life and you have light to share with others or you are having a day where you can’t seem to break through the darkness, follow the light. There is always enough love, so share it, embrace it and accept it.